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    United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

    "A few of our carers and former patients have kindly shared about their time with us and their recovery. You can read them all below:" You can now read about our CQC rating from the 2018 inspection.
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    United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

    The National Inpatient Centre for Psychological Medicine delivers biopsychosocial holistic care for people with complex persistent physical symptoms and physical / psychological comorbidities. The NICPM is an eight bed specialist inpatient unit based at Leeds General Infirmary. It is a unique...
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    United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

    The ME services in the area are run from the Psych hospital: "The Newsam Centre Services at this location: Acute Inpatient Services Community Rehabilitation Enhanced Support Team (CREST) Complex (Locked) Rehabilitation – Newsam Centre Ward 5 Eating Disorders Service (Adult) Gender Identity...
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    United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

    She was in Leeds General Infirmary. Although it is unlikely that GPs have much influence in a hospital setting, this is the area of: Dr Vikki McKeever GP with specialist interest in ME/CFS Yorkshire Fatigue ME/CFS Service and Leeds and West Yorkshire ME/CFS Service The author of the recent...
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    BACME -The challenges from diagnosis to treatment mean that ME/CFS can have a dramatic impact on patients’ lives.

    The same style of picture of young woman, sitting with hand to head. Also her eyes are closed.
  6. M

    Who is Simon Wessely?

    Thanks so much for doing this Robert
  7. M

    Who is Simon Wessely?

    "Water Pollution (Camelford) Mr. Neale Sharethis specific contribution To ask the Secretary of State for Health what progress has been made in providing a small group of independent experts to advise the local health authority on the health consequences of the water pollution in the Camelford...
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    Who is Simon Wessely?

    Wessely was unfortunately not mentioned. However a report at the time - the Clayton report, referred to in Hansard below clearly aims to minimise the effect of early issues and raises anxiety as an explanation in below (my bolding) Hansard...
  9. M

    Fred Rossi - Writings related to ME/CFS

    Such a brilliant article and so good to share. A shame that any BACME people would dismiss it. This guy would probably be classified as "mild" per NICE as he is still able to work, just!
  10. M

    United Kingdom: Sussex & Kent ME/CFS Society News

    I am not surprised to see Anna Gregorowski (Chair of BACME- when I last looked) praising them. But Dr Vicki McKeever as well ... You will not be surprised to know that Graham McPhee and Bob Courtney were kicked out of Colin's group. This was prior to me joining Graham's Crowborough group (now...
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    UK BACME ME/CFS Guide to Therapy 2025

    Has anyone spotted the bit where the "specialised therapist" offers to write a supportive letter for UC or PIP explaining the level of disability that the pwME at the clinic is experiencing and that the likelihood of recovery is very small?
  12. M

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    England only: Social Work England is under independent review. Evidence is being sought from everyone. I strongly recommend every family who has experienced persecution by social workers gives evidence. Evidence to provide is, for example, did they refer to NICE G206? Did they include you in a...
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    Who is Simon Wessely?

    Poison water BBC 2 9pm Weds Camelford water scandal July 1988 - will be on iplayer afterwards The angle, from the Radio Times is that the delay in warning people of the dangers of drinking the water was " because the incident couldn't be allowed to spook City investors in the run up to...
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    I suspect that backbenchers apply for a debate, but they do not know themselves whether it will be selected for a particular session until a short time before the date.
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    The importance of diagnosis from the perspectives of young people with Long COVID, their parents, and healthcare professionals 2025 Faux-Nightingale+

    So, four CYP interviews, 3 of which included a parent. Then focus groups with seven professionals. and then clinicians complain that surveys of hundreds or thousands of pwME or LC are not important!
  16. M

    USA: Dr Peter Rowe MD

    David Systrom (Harvard) has shown preload failure, ie reduced filling of the heart before it contracts to send blood round the body, including thr brain.
  17. M

    UK - NIHR Call for research on Virtual Wards, 2025

    This would definitely have helped Graham, who had moderate ME, for at least some of the time he was in hospital. He had problems hearing/understanding. His wife and son could not visit, partially due to risk of catching Covid and part due to their health. He couldn't eat onions/garlic and...
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    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    It's maybe more likely to relate to the article mentioned here: https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2 Also on UK info thread . Also members of the LC APPG may not have heard that much about DECODE yet
  19. M

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    DELAYS IN RECEIVING PIP FORM BY POST I have finally got round to applying for the mobility element of PIP because of the limitations relating to my spinal deformity. I called DWP on 11 Feb and was told it could take 2-3 weeks for a form to arrive. As mine is straight forward and only requires...
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